Decreasing B12 : Hi everyone, Diagnosed with... - Thyroid UK

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Decreasing B12

ML44 profile image
ML44
8 Replies

Hi everyone,

Diagnosed with hypothyroidism in April and my B12 has been going lower on each blood test despite no change in diet, I’m wondering if anyone else has experienced this? I’ve asked for an B12 injection to see if it makes me feel better as still feel really rubbish but my doctor is hesitant and has referred me to haematology but it’s an 18 week wait. Does anyone have any advise? Or shared experience? Results as follows:

April 358 (200-700)

June 258 (200-700)

July 231 (200-700)

Any help hugely appreciated x

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ML44
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SeasideSusie profile image
SeasideSusieRemembering

Do you have any signs of B12 deficiency

b12deficiency.info/signs-an...

ML44 profile image
ML44 in reply toSeasideSusie

Yes, although I don’t know if linked to under active thyroid?

* Tinnitus

* Tremor (hands shake when with slight adrenaline, never used too)

* Paresthesia - numbness, tingling and pain (Carpel Tunnel)

* Confusion / disorientation (occasional)

* Weakness of legs, arms, trunk (yes, sometimes with no trigger, specifically when exercising, can’t do what I used to)

* Unsteady or abnormal gait / falls

* Balance problems

* Difficulty walking

* Dizziness

* Visual disturbances / decreased-blurred vision

* Forgetfulness, memory loss

Neuropsychiatric

* Memory loss

* Depression

* Anxiety

* Irritability

* Personality changes

Haematological signs and symptoms

* Generalised weakness, fatigue

* Breathlessness

Vascular

* Orthostatic hypotension/ Postural hypotension (low blood pressure when standing, which can cause fainting and falls)

* palpitations

Gastrointestinal - signs and risk factors

* Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals)

* Constipation

* Malabsorption syndromes - Crohn's disease, coeliac disease etc) BLOOD TEST OUT OF RANGE FOR COELIAC but not enough to cause concern, I avoid gluten though and hear this can affect test?

Additional Signs and Symptoms

* Fainting/light headedness

SeasideSusie profile image
SeasideSusieRemembering in reply toML44

You should list all these signs/symptoms to discuss with your doctor and ask for further testing for B12 deficiency/pernicious anaemia.

Also, pop over to the Pernicious Anaemia Society forum here on HealthUnlocked, list these and your falling levels and they may comment and offer some suggestions

healthunlocked.com/pasoc

ML44 profile image
ML44 in reply toSeasideSusie

Thanks Seaside Susie; I’ve spoken to the gp about symptoms but my thyroid still isn’t under control and some symptoms are synonymous. GP wants to understand what’s causing it to go lower before medicating but it’s an 18 week wait and it feels a long time. I will see if anyone over on pernicious anaemia has any tips to feel better :) thank you x

SlowDragon profile image
SlowDragonAdministrator

So are you on Levothyroxine?

If so, how much?

Have you had folate, vitamin D and ferritin tested too?

If not, GP should do so

Or test privately via Medichecks or Blue Horizon

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Has cutting gluten caused any reduction in symptoms?

Gluten free diet does need to be absolutely strictly gluten free to be effective

ML44 profile image
ML44 in reply toSlowDragon

I take 100mg Thyroxin although my T4 is slightly elevated as is my TSH so awaiting haematologist.

I’ve been pretty much gluten free for around two years. If on occasion I do eat gluten I become hugely bloated (flat stomach to looking like I’m with child!) but I don’t know if that affects my b12 levels at all.

I’ve had a lot of bloods done and everything else looks fine. X

SlowDragon profile image
SlowDragonAdministrator in reply toML44

So as you are largely gluten free a coeliac blood test was unlikely to be positive

For an accurate coeliac blood test (or ideally an endoscopy) you would have to do the "gluten challenge".....this is eating gluten at every meal for minimum of 6 weeks

However only 5% of Hashimoto's patients are coeliac, yet about 86% find gluten free diet reduces symptoms. There's no test for non coeliac gluten Sensitivity

Only you can decide if it's worth doing that.

If your TSH is over 2 you need dose increase in Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

Essential to regularly retest vitamin D, folate, ferritin and B12 and extremely common to need to be supplementing some or all of these virtually continuously to maintain optimal levels

If vitamins are too low this can badly affect how Thyroid work.....poor conversion is common issue

What supplements do you currently take?

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

SlowDragon profile image
SlowDragonAdministrator

Low stomach acid is extremely common when hypothyroid, especially with Hashimoto's

Have you had thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto's?

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

scdlifestyle.com/2012/03/3-...

naturalendocrinesolutions.c...

Previous post about further B12 testing

healthunlocked.com/thyroidu....

nutris.viapath.co.uk/pages/...

Low stomach acid as cause of low b12

healthunlocked.com/thyroidu...

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